Lyn and Viv had been involved in their local stroke group for three years when the COVID-19 pandemic hit. When the lockdown closed their local group they were ‘gutted’. However, staff at the Stroke Association were already working with local stroke group leaders on plans to continue support for members.
Initially the focus was on members’ health and welfare and Lyn and Viv’s group started making regular phone calls, particularly to those who lived alone. However quickly conversations dried up:
“I think everybody realised, quite quickly, that we had to think outside the box and find other ways of trying to keep in contact and keep spirits up.” - Viv
With support from Nesta’s Accelerating Ideas programme, the Stroke Association delivers 216 local stroke groups across the UK, as well as supporting another 238 independently run groups that are affiliated to the organisation.
Through regular contact with group leaders, the Stroke Association team heard there was some enthusiasm for trying online peer support meetings. They set about supporting the move to online channels – providing guidance on online safety and data protection and advice around technology.
Many groups have made the move to online, and 67 per cent of groups offer remote support of some kind with telephone trees popular among those not using Zoom. The groups provide varied activity too, with arts, exercise, singing and social activities.
The Stroke Association facilitated regular meetings of group leaders across local forums. These forums not only offered groups leaders some peer support, but have also spurred innovation.
Meeting on Zoom has meant groups could “share” activities across areas. Several new groups have come together through the pandemic, including a pan-Scotland “online café”, groups of people from different ethnic minorities, and groups of younger people from across the UK. Groups have also benefited from national partnerships – for example with InterAct who work with actors to facilitate sessions – which in turn has taken pressure off group leaders.
Lyn and Viv have enjoyed the sessions they’ve attended:
“I think it has kept us a bit more active, with the art, group meetings where we all talk. It has kept us going, hasn’t it?” - Lyn
However there have been challenges. Engaging with Zoom has not worked for everyone, as Viv explains:
“Although the opportunity is there, on Zoom, for a lot of people to use the group… a lot of people choose not to. It doesn’t suit everybody.”
For Lyn, engaging online can be challenging, due to some of the ongoing effects of her stroke:
“I suffer with headaches as well, so I can go on Zoom, but sometimes, I have to say bye because my head just kicks off.”
These have not been easy times for groups. Facing bereavement without being able to offer face-to-face support has been hard, and volunteers have often struggled with feeling responsible for those who could not engage online – including many people with communication difficulties such as aphasia.
Looking to the future, group leaders have sought assurance that the Stroke Association would support them in returning to face-to-face meetings. The Stroke Association has produced a collective risk assessment for their groups on face-to-face outdoor meetings, to minimise the burden on individual groups. The guidance is freely available to all groups to help inform their planning.
Viv and Lyn are looking forward to meeting in person again:
“I feel more comfortable talking to people, face to face.” - Lyn
However, the Stroke Association envisages that online support may continue alongside face-to-face. And Lyn and Viv recognised that Zoom meetings might play a role alongside face-to-face meetings:
“There are still activities there that could be done, that we can’t necessarily get in a group setting. I do think Zoom’s been brilliant and could still have a very important role to play but it doesn’t replace face to face.” - Viv
Through the pandemic, the Stroke Association has learnt a lot about the importance of volunteers and group leaders being able to shape things. Offering clear support and guidance and creating space for members to lead has helped many groups to innovate, and continue to offer vital support to people affected by stroke.
You can find out more about the Stroke Association’s work with groups from their 2020 online UK Stroke club conference.
The Stroke Association are one of eight organisations supported through Nesta’s Accelerating Ideas programme. Over the last five years, Nesta has worked in partnership with National Lottery Community Fund to scale up to eight innovations that help people to age well, feel connected to others and be part of active, engaged local communities.
You can read more about the Accelerating Ideas programme here.
You can read more about Stroke Association’s Hand in Hand group support here.